Archive for the ‘The Headache’ Category

After stabbing You See El Aye (in my imagination) for the past week, I called them again today and was finally able to make an appointment. With a neurologist, though, uh, they didn’t tell me which one.

That is the good news.

The bad not good news is that the first available appointment was October 21st, which is exactly 7 weeks from today. OUCH. Oh and right in the middle of an exam, which I will hopefully be able to take early. If I hadn’t taken this appointment, I’d have had to wait another week for the next available opening.

SIGH. Small, tired stab.

I have had a bad feeling since I made the appointment. My insurance doesn’t allow for second opinions. I literally get one neurology referral for the year and if the doctor is crappy or if they, you know, are impossible to get an appointment with when you need one, I’m completely out of luck.

I don’t know this doctor at all, I mean literally, I don’t even know their name and I am entrusting them with my only neurology referral for the next 11 and a half months. It scares me. A lot.

Realistically, I know I can wait 7 weeks for an appointment. I’ve waited for 13 months with this headache now, and though there have been times where I didn’t know if I would, I survived.

And yet, something about the idea of waiting 35 more days before I can possibly get help is killing me.

I am tired, I’m starting to struggle with focus at school and it’s only the second week of the semester. I want to exercise and be active, but on a good week that’s only really possible 2 or 3 days in the week. On a bad week, it’s out of the question. I’m having a great deal of trouble sleeping lately, and that’s with a sleep aid every night.

I just feel like things are escalating and while I realize that there’s little to no chance that this new doctor will have a miracle cure, the thought of waiting 7 weeks to get that news is really difficult for me to come to terms with.

I am trying, I really am, to stay positive, to be hopeful. But I am also fighting against pain that just seems to be getting worse, that is not alleviated with any medication or heat or ice. I’m fighting against pain that knows no end, knows no cure.

Pain that each and every day takes a little more of me, of my life, away.

So, the insurance year restarted last month which means a few awesome things for me.

1) The out-of-pocket maximum cost that I met last year is all gone and we’re starting anew
2) I need new referrals for all my specialists.

Both of which are a real treat, trust me.

Last Thursday I scheduled an appointment with the student health center to get new neurology and neurosurgery referrals. I hadn’t picked out a doctor yet, but I wanted the papers so that I could figure it out and start scheduling asap, because these headaches? are seriously not fooling around anymore. Holy God.

The doctor I see at the health center there has met me, um, twice? if that many times, but he remembered that I had neurological stuff and recommended an outside neurologist at an institution that I’ve been considering lately, let’s call it, um, You See El Aye. Subtle, right?

So on Friday, I called You See El Aye to schedule an appointment. They asked me if I had a You See El Aye identification number, which, um, no. So I needed to call their 1-800 number to get an ID number and then fax them my referral and then call them back to schedule.

Right. So I got the ID number, faxed the referral from my apartment complex office (the nearest free-est fax machine) and called them back to schedule where, after waiting on hold for 22 minutes, I learned that it takes 24-48 hours to process a fax because it’s 1985 and it apparently takes that long to get information. Oh wait, no, IT’S NOT.

STAB.

Fine. So I called back on Monday to schedule. But this time, I couldn’t schedule because they decided that my referral needed to be reviewed by a case manager. I DON’T EVEN HAVE AN APPOINTMENT, HOW CAN I NEED A CASE MANAGER?!? GAH.

Again, I did as I was told and called later Monday afternoon to discover that the case manager had decided that they needed more information to place me with the right You See El Aye neurologist. And as soon as my doctor faxed the form back, I’d be good. Which worked out SUPER well since they faxed the referral to MY APARTMENT COMPLEX.

STAB STAB STAB.

FINE. I called back Tuesday and found that my doctor hadn’t returned the form (that they resent to his office after I pointed out that my apartment complex would be profoundly worthless in my health woes) and I tried to explain that this doctor doesn’t know me from Adam and therefore would be totally useless for this purpose. But they were unconvinced and continued to insist that this doctor would be able to help. They’ve obviously never met him.

But better yet, I was told that the whole reason we’re doing this extra form is because they don’t really want to see me, they want to send me over to neurosurgery. Because they don’t treat Chiari Malformation and apparently if you want medical not surgical management you are shit. out. of. luck.

STAAAAAAAAAAAAAAAB.

I tried to call the neurosurgery office to speak to them but they’re only open from 9 to 4 (note to self: in next life, be a neurosurgeon). So that was helpful.

And now I’m still waiting for my doctor to return the form so that I imagine I can be told I cannot see a neurologist any way and I’ve just wasted a week of my life, spent literally HOURS on the phone and in the end will not have a doctor at all AND will get to restart this whole fucking process again with neurosurgery.

Did I mention STAB? Because yea, that.

Tomorrow,

I finish my first clinical rotation.

I finish my first full year of graduate school.

I will have succeeded at something I thought I’d fail at.

I will have succeeded at something that I was told by some that I should quit.

I will have exceeded expectations. Including my own.

I know it seems silly. There are 95 other people in my program alone who are finishing a clinical (though it is their second, since I missed my first), it’s not really a noteworthy occasion in and of itself.

But when you finish your first year of graduate school having been on medical leave of absence twice, in addition to having a 5 pound lifting restriction for 3 months of the second semester and missing more than 15 days in the first semester, then, well, it at least feels noteworthy. Sometimes it feels parade worthy, if we’re being honest.

And not only did I finish, not only did I accomplish this goal, I did a really good job. I have received really great evaluations, positive feedback and really great constructive criticism. I’ve learned so much and I feel like I’ve grown in this profession. I feel reaffirmed in my career choice, I feel like I can actually do this. Like I want to actually do this.

And I feel so thankful for those who supported me, who wouldn’t let me quit all the times I tried. Who let me cry to them when it seemed hopeless, and cry some more when it seemed even more hopeless. Who told me they’d love me no mattered what happened.

This happened. Thank you for loving me through it.

33 days down, just 1 more to go.

So, I’m going on vacation next week. In fact, I’m leaving in 3 days. Which reminds me, I probably should unpack from the last trip and maybe get a rental car to get us the 120 miles from airport to hotel. Whatever.

And because I know my naysayers (read: trolls (read: assbags)), I know that soon there will be (more) comments about how I shouldn’t be going on vacation because I have a headache. I already got one this past weekend for going and well, I think this needs to be addressed.

I have a headache.

I don’t have a bleeding wound. I don’t have a blood clot threatening to jump into my lungs and kill me. I don’t have severely clogged arteries or all the risk factors for a stroke or massive heart attack. I don’t have a bleeding ulcer or a raging case of sepsis.

I have a headache. I have it every day no matter what.

And there is no reason that I shouldn’t, no reason that I don’t freaking deserve to go on vacation.

I literally haven’t gone on a real vacation, one that is longer than a weekend, one with my husband, in 2 years. I have just survived what is undoubtedly the longest and toughest years of my life. I will have just finished my first clinical rotation.

I need a vacation.

And sure, vacation often makes my head hurt worse. But so does standing up. So does walking. So does BEING CONSCIOUS.

The idea that because I am in pain I shouldn’t take a vacation, or shouldn’t relax, or should give up on fun things in life is absolutely batshit crazy.

I don’t know if my head will get better, or God forbid worse. I have a week off before school starts again and I am going to enjoy that time. I’m going to (GULP) zip line over the mountains in Canada. I’m going to hike and walk and enjoy the great outdoors. I’m going to snuggle with my husband and sleep in and lay by a pool. I’m going to (hopefully) visit with friends who live nearby-ish.

I went to New York this weekend to visit with my friends. And by and large, I managed. The headache was mild Friday and Saturday and then as a result, I hardly slept Saturday night because of the severity of the pain. And was downright miserable all of Sunday. But, I survived. And to me, it was worth it. And that’s something that only I get to judge.

I realize that I am provoking pain when I do some things. I know that sometimes I make bad choices. I get that not everyone understands why I continue to try things that might make my pain worse, on the outside, it seems crazy. But doesn’t it seem more crazy to not live life in fear of more pain? Doesn’t it seem worse to never enjoy each day because you’re afraid that it’ll make the next one tougher?

So you’ll just have to trust me. You’ll have to understand that I make calculated decisions, ones that often bite me in the ass, but also ones for which I don’t need you to admonish me.

My head does that without any help from trolls or assbags.

I didn’t think this day would come.

I hoped it wouldn’t, but feared it would. Somewhere in the back of my head I always knew it was a possibility and then later, a probability, but I’m still surprised.

As of today, my head has hurt every single moment of every single day for a year.

A. whole. year.

To be honest with you, I sometimes struggle to remember what it was like before this past year, what it was like to not have pain. Because this pain is interwoven into every aspect of my life now. It is a part of me like my hair color. Like my love of chocolate. I’m Katie, I have chronic pain, I also like cats.

I don’t remember what it’s like to sleep through a whole night. I don’t remember what it’s like to not carry drugs with me at all times, drugs that won’t take away the headache, but may mitigate the dizziness or the nausea. I don’t remember my life before headaches, I just remember that things used to feel easier. I don’t remember what it’s like to not have to worry about what I might not be able to manage the next week, the next day, the next hour.

I don’t remember what it’s like to not have my life punctuated with pain.

There have been good things this year. There are victories that have been made sweeter by the fact that they have been hard fought. I have survived what would be a tough year without the complication of pain. But I have survived that year, with pain, in spite of pain, in the face of pain. I have managed when I probably should’ve quit, I have struggled and fought back. I have achieved what I was told I wouldn’t, and I am proud of myself.

And for that perspective, I am thankful.

But I am also tired.

I’m tired of fighting, of everything taking more energy than it should. I’m tired of always trekking uphill when I should be on level ground. I’m exhausted from my life, from surviving this past year. I’m tired of fighting everything, all the time.

I’m tired of life being a fight.

I know that life isn’t meant to be easy and if it was then the joys would be less joyful, the memories less cherished. I know that it’s the hard parts that give perspective to the easy parts. I know all of this and all the other platitudes. And yet, there is so much about this past year, about this life, that I don’t know.

I have been shaped into a different person by this year, one that I don’t fully know, one that I often don’t recognize. The person I am is unpredictable, often fragile. The person I am is sometimes sad, she hides in plain sight, she paints on a happy face when she is miserable inside. The person I am is scared of living more than anything else.

I never thought I would live through a year with constant pain. Partially because I didn’t think I could survive, but also because all along, I imagined that there would be an end point. There would be a day when it stopped, or there would be a solution. That day, that solution never came. I don’t know if this is just the first in many years of pain, I don’t know if it will all stop tomorrow.

I am not giving up yet.

I’m not quitting even though many days that would be the easiest thing to do.

I’m not going to adopt a new way of life or suddenly become a person I’m not.

I’m just going to live tomorrow like I have the last 365 days. With fear, with determination, with pain.

And with the hope that maybe the next day, the next week, the next month and now the next year, will be different.

Today has been a duplicate of yesterday except that the headache didn’t wake me up at 4 in the morning, but after a restless night, it was there in all it’s unholy painful glory first thing this morning. Again, I made it through work, but it was a chore. A miserable chore.

I honestly just don’t know what to do with myself. I really don’t. I’ve tried everything I know, everything I’ve heard that doesn’t cost a bunch of money. I’ve tried every medication suggested.

I do not know what to do.

I have always said that I wouldn’t let pain stop me, that I would manage, succeed in spite of it. That has always been my plan, my mantra. I’m doing my very best to minimize the whining, but I don’t know if I can succeed in spite of this pain. I don’t know if I can make it through another day like today, like yesterday. I don’t know how to manage my life when it feels like this. I feel like all the practice, all the pep talks, all the work so far hasn’t prepared me for this kind of pain, for this challenge.

I sent my husband a text earlier today and I’m just going to tell you all the same.

I cannot live like this, I cannot deal with this. And I need to do something, anything, to make it stop.

I have until August 14th to see any doctors in the Los Angeles area, after that my insurance changes to Aetna and I’m not sure what my limits will be. But I’m officially taking suggestions.

Let’s assume that we’re less concerned about it being a problem that needs a Chiari specialist and more concerned with it being absolutely blinding, relentless headache pain. I need your help.

Please, help me find a way to make this stop.

It has been a rough day.

I woke up at 4 in the morning with a MASSIVE headache. It was the kind of pain that makes you pause and wonder if the world is ending. The kind of pain that makes it hard to breathe, hard to move. The kind of headache that makes you sit up at 4 in the morning and wonder if you have freaking meningitis. That’s how bad it was.

I managed to shove some pills into my mouth to deal with some of the side effects of the headache (because there’s just nothing that helps the pain) and I attempted to go back to sleep. At best, falling back to sleep would’ve been tough with that amount of pain, but when you add an adorable little cat who really believes that 4 in the morning was the most perfect! time! ever! to eat and in protest of not eating decides to climb in and out and in and out and IN AND OUT of the blinds 20 million times, well, sleep is nearly impossible.

That did not make the day any easier.

Looking at this month, I’m starting to worry. I haven’t had this many bad days in a long time. It doesn’t seem to be related to stress, especially considering my weekends are every bit as bad as my weekdays. It doesn’t seem to be related to difficulty of work because light days are every bit as bad as difficult ones. It doesn’t seem to be related to anything.

But it’s getting worse. It’s getting a lot worse.

The headache I had in the middle of the night last night was the worst headache I’ve ever had that wasn’t the result of a lumbar puncture and subsequent spinal fluid leak. It was terrifying because it came out of no where and awakened me from a dead sleep (again, about having a freaking baby. My subconscious has SUCH issues). Thankfully the pain did go down some and I was able to go to work, but all day I have felt miserable. All morning I felt like puking, and all afternoon I’ve just wanted to sleep. Or cry. Or both.

I don’t know what to do at this point. I don’t know where to go, who to call, what to try. I don’t know how to manage when the pain is like this. I made it through the day today, but it was by far the toughest thing I’ve done in a long time.

I can’t keep doing this. For the first time in a while, I’m genuinely scared of tomorrow.

To my very core, I’m terrified of that pain, of this pain. Of more pain.

The neurologist’s visit was…interesting.

I left my house at 7 for my 9:15 appointment and I arrived at the doctor at 10. The 3 hours it took me to go those 46 miles, which did some really fantastic things to my stress and headache levels, trust me. Even the doctor noticed that I looked subdued when she finally saw me. Frankly, the fact that I was even upright by that point made me want a freaking trophy.

The appointment itself was pretty quick. I had decided before I went in there that I needed a medication break. I need to be clear-ish headed at my clinical and that means no crazy meds right now. I can’t deal with side effects and hands-on learning all day long. It’s just too much.

The doctor wasn’t thrilled, to be honest, she’s still really displeased with my education/career choice, but she understood about the medication/side effects and thought it was a reasonable idea.

I had also brought with me an article that a friend found about a woman with the same symptoms as me and the exact same opening pressure who was determined to have a Vitamin A deficiency. (Vitamin A is important in the production of CSF, so logically, it makes sense that low Vitamin A = low pressure). We talked briefly and she said for now to just try a multi-vitamin and we’d reassess things in a few months.

The other option that I asked about was one that she and my neurosurgeon both mentioned in passing. Wearing a tight brace around my stomach should increase the pressure in my head via some mechanisms that are not all that important. She agreed it was worth a try, gave me a few brands to look at.

And that was pretty much it. Literally. That was pretty much it.

I’m not really sure how I feel about it.

On the one hand, I’m trying new outside of the box things, which I appreciate. On the other, I feel like I’m being my own doctor right now. I don’t fault my doctor for this, but I guess I was hoping that when I came in she’d have some ideas stacked up and, well, she really didn’t have anything. If I hadn’t suggested the vitamin and the binder, I’m almost entirely sure they never would’ve been considered, period.

And now I’m mostly just considering things. Because come August, I have to commit again. I only get one neurology referral for the next year and I’m honestly not sure if this is the right doctor for me. She’s very kind and I’m sure very knowledgeable, but I don’t know, there’s something that just doesn’t fit. It’s hard to articulate this because I honestly don’t even know what it is. I just feel like I’m not going to get anywhere with this doctor.

But then there’s the possibility that it has nothing to do with the doctor at all.

There may not be a neurologist who is a good fit. There may not be one who is knowledgeable in this area because “this area” of neurology isn’t really an area at all. It’s just me. It’s just me, not fitting into any categories of pain that are understood. Not falling into any protocols that could help. It’s just me.

And that is a little scary.

But it’s life. And if there’s anything I’ve learned in these past 11 months, it’s that life is scary. And so I’m just going to keep moving forward, keep thinking, keep researching, keep learning. Keep facing this fear.

This fear that is my future, my life. My everything.

On the internet, I’ve encountered hundreds of people with the same brain/skull issues that I have. I’ve emailed, facebook chatted, tweeted, commented on blogs. I’ve always been virtually surrounded by those who have experience similar things, who understand the trials and tribulations of Chiari.

Today, for the first time, I met someone in real life with it.

It was just a coincidence. I’ve been helping treat this woman for two weeks now and she mentioned something about brain surgery and it was then that I noticed her very faint scar. We shared stories and compared symptoms. She had her surgery in 1995 and has been symptom free since. I told her my surgery was in 2007 and I kind of left it at that. It’s hard to talk, in person, about the way things are now. It’s even more difficult when you’re supposed to be the health care professional, not the patient.

When I walked out of her room, I felt conflicted. It was sort of awesome to have finally met another person with chiari, to have heard about her struggles and how similar our symptoms were. But at the same time, it was discouraging and a little sad that this woman had her surgery all these years ago and now has no headaches, no neurological symptoms. She’s fine. She’s recovered and normal.

I’m not. And frankly, that sucks.

I have an appointment with my neurologist/pain management doctor on Tuesday. I already rescheduled it because it was supposed to be in my first week of my internship and I’ve been tempted to reschedule again. But I know that the more I push it back, the less chance I have of going. And while my expectations for any success with this doctor are low (which is mostly unrelated to the doctor and more related to the reality I’ve accepted), I also can’t shut that door yet.

I did try the medication she prescribed. I hated it. Hate hate hated it. I wasn’t been able to increase from the original dosage because, even though it’s supposed to raise my blood pressure, all it did was make me dizzy all the time, which is more of a symptom of low blood pressure, ironically. I have never had as much difficulty with unrelenting dizziness and lightheadedness than I had while on that medication and I knew that there was just no way I’d be able to be competent and safe at my clinical if I continued to take it. I didn’t get to give it as much time as I wanted to, but it was somewhat beyond my control, and unfortunate.

I expect to get a lecture from the doctor about not calling sooner, not telling her about the reaction to the drug, and I deserve it. But I want to talk to her, face-to-face about things. I don’t just want to switch to the other medication she had on the list of (2) things that might stand any chance of possibly doing anything for this headache. I want to discuss some articles that a friend found and see if she can run a few simple blood tests to rule out something we hadn’t yet considered.

What I really want is to walk into her office and have her figure out the root of this 11 month old headache and the ultimate answer to it. But, I know that’s not realistic, I know that won’t happen and so I’m steeling myself for that lecture, for disappointment, for another dose of reality.

And hoping that at some point, I’ll get the pain free future that my patient has. That I’ll have a real answer, the kind that closes this chapter of pain and misery.

Two weeks ago when I went to the neurosurgeon he said that we should move forward with another blood patch. I wasn’t happy, to put it mildly. I agreed anyway because I felt like I would be a hypocrite if I spent so much time saying that I would do anything for pain relief, but then turned down the only treatment available.

And yet, that’s exactly what I’m going to do.

I’ve spent hours researching, combing through articles, trying to find literature that gives any evidence that I have a spinal fluid leak. But simply put, there aren’t any articles, there isn’t any evidence. My symptoms do not match up with a leak. The protein in my CSF isn’t high, the headache has lasted for over 9 months when a leak should resolve on it’s own much, much faster.

And most importantly, the other patch didn’t stop the pain. I think that the brief partial relief of that patch was almost entirely because shooting that much blood into my epidural space caused my pressure to increase. Which makes sense when you realize that as soon as the back pain from the pressure went down, the headache came back. It basically makes perfect sense.

I have intracranial hypotension, but I do not have a spinal fluid leak. My brain is what’s wrong. I’m not producing the adequate amount of spinal fluid, and that’s why my head hurts.

And that’s really why I’m saying no. Of course, I also don’t want to give up my only 4 days of vacation between semesters to an incredibly painful procedure. I don’t want to spend the thousands of dollars that this procedure costs. I don’t want to deal with the side effects and extra pain that isn’t helping me in any way.

And if I’m being completely honest, I don’t want to exhaust this option. I don’t want another treatment to fail. Because it means that there’s almost nothing left we can do.

And yet I’ve spent hours today, in tears, because the alternative isn’t good either.

My insurance only allows one referral per specialty per year, and I’ve already used up my neurologist and neurosurgeon this year. Going back to the old neurologist is not an option because she’s already thrown her hands up in confusion with my case. And going back to the neurosurgeon right now isn’t really an option either. He has given me 3 choices, and frankly, none of them work for me right now. It’s not his fault, he’s doing everything he can.

So what this boils down to is that I’m giving up. For now.

I am not saying that I’ll never try again. I’m not saying that I’ve given up all hope of ever having a pain-free life.

But what I am saying is that I need a break. The treatments are becoming almost as bad as the headaches. And when they don’t improve the headache, then it’s just extra pain for no reason. I cannot bear more physical or emotional pain right now. I just can’t.

I know several of you are mad at me, disappointed with me. And I get it. Yes, I would fight harder for others I love, no, I wouldn’t let them quit. Yes, that makes me a raving hypocrite, I’m aware of this.

But I’m tired. I can’t fight anymore. I don’t have the energy, I don’t have the sanity, I just can’t.

And I hope that you can understand that if I thought there was another option that didn’t take even more of me right now, I’d do it. But there isn’t.

Yes, I am very intentionally closing this door to this treatment. And now I’m just praying that somewhere, somehow, a window of relief will open soon.